Rheumatoid Arthritis Support Group
Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...
Sorry if long in advance.
I was on methotrexate for 2 weeks and developed killer daily nonstop headaches. Third dose came, called rheumy. She said I can take 10 folic acids and wipe away the methotrexate and see if it was the culprit. I did 12/21. She said I'd be in pain, warned me, but said it's the only way to see. So headaches disappeared and I went into a full blown horrific flare the week of Xmas. She returned Monday the 30. I called and she called in arava. I told the nurses my flare was bad. Was on 5 mg prednisone and wasn't told to increase it. Wasn't given and pain meds. Just a new script for arava. I got so bad I called back and got an emergency appointment. She upped my prednisone to 15 mg, told me come back in 2 weeks, and if arava isn't working will start orencia or humira injections. She's smart, treating me aggressively I believe since my tests are currently negative (just diagnosed 3 months ago), but...
She knew I was in tears. The pain has been hideous. I was taking 10-12 ibuprofen and 10 Tylenol daily, which I told her. I have an old script of indomethacin, I took 2 a day also ( anti inflammatory). She said oh no you can't do that referring to the amount of meds I was taking. She prescribes nothing to help temporarily during the flare other than increasing prednisone, which a week later has helped finally...I've developed severe burning in my stomach through to my back, which I assume is an ulcer from the daily high ibuprofen...it's horrible an hr after I take it so I assume it's the cause. She is so gun shy of pain meds, anything other than prednisone that I am thinking of switching rheumatologists. I don't need pain management when it is controlled, but it isn't controlled and I've been left to fend for myself I feel. She is an hr away and I have a brood of kids I have to find a sitter for as well.
There's a rheumy down the road from me I can see. Was initially told I need a referral, but since I'm currently seeing a rheumy, this one can see me if I transfer my records. I am scared all rheumys are like this and expect us to stay home bawling with hands that can't close a coffee mug as we sit praying our treatment meds will begin working. Is this the norm? Will I be disappointed with this new person and burn a bridge? My current rheumy is smart, aggressive and personable. I just hate I've been made to suffer and have been in hell for 2 weeks, and she says feel better, see me in 2 weeks and increase prednisone. By the way, I'm taking 20 not 15 like she said, and I'm still in significant pain. What if this new Dr doesn't treat negative patients like positive? My current rheumy told me for all intensive purposes, I have RA and it can take 2 plus yrs for tests to reveal positive serum levels.
Sorry for the novel. I just need opinions from pros that have been there done that with this disease, with doctors, and meds etc. Thank you so much for your advice!
I was on methotrexate for 2 weeks and developed killer daily nonstop headaches. Third dose came, called rheumy. She said I can take 10 folic acids and wipe away the methotrexate and see if it was the culprit. I did 12/21. She said I'd be in pain, warned me, but said it's the only way to see. So headaches disappeared and I went into a full blown horrific flare the week of Xmas. She returned Monday the 30. I called and she called in arava. I told the nurses my flare was bad. Was on 5 mg prednisone and wasn't told to increase it. Wasn't given and pain meds. Just a new script for arava. I got so bad I called back and got an emergency appointment. She upped my prednisone to 15 mg, told me come back in 2 weeks, and if arava isn't working will start orencia or humira injections. She's smart, treating me aggressively I believe since my tests are currently negative (just diagnosed 3 months ago), but...
She knew I was in tears. The pain has been hideous. I was taking 10-12 ibuprofen and 10 Tylenol daily, which I told her. I have an old script of indomethacin, I took 2 a day also ( anti inflammatory). She said oh no you can't do that referring to the amount of meds I was taking. She prescribes nothing to help temporarily during the flare other than increasing prednisone, which a week later has helped finally...I've developed severe burning in my stomach through to my back, which I assume is an ulcer from the daily high ibuprofen...it's horrible an hr after I take it so I assume it's the cause. She is so gun shy of pain meds, anything other than prednisone that I am thinking of switching rheumatologists. I don't need pain management when it is controlled, but it isn't controlled and I've been left to fend for myself I feel. She is an hr away and I have a brood of kids I have to find a sitter for as well.
There's a rheumy down the road from me I can see. Was initially told I need a referral, but since I'm currently seeing a rheumy, this one can see me if I transfer my records. I am scared all rheumys are like this and expect us to stay home bawling with hands that can't close a coffee mug as we sit praying our treatment meds will begin working. Is this the norm? Will I be disappointed with this new person and burn a bridge? My current rheumy is smart, aggressive and personable. I just hate I've been made to suffer and have been in hell for 2 weeks, and she says feel better, see me in 2 weeks and increase prednisone. By the way, I'm taking 20 not 15 like she said, and I'm still in significant pain. What if this new Dr doesn't treat negative patients like positive? My current rheumy told me for all intensive purposes, I have RA and it can take 2 plus yrs for tests to reveal positive serum levels.
Sorry for the novel. I just need opinions from pros that have been there done that with this disease, with doctors, and meds etc. Thank you so much for your advice!
i noticed the MOST nonchalance from the rheumies prior to and at the beginning of my diagnosis. now was that because I was a novice myself, had not yet found the Rheumie that was right for me, or because the pain was so perplexing, new and i had not set my pain meters to work with it daily? i just remember the first rheumie being a "shrugger" fatigue? "shrug" pain? "shrug" including one quack named trentham who stated that he would NOT treat anyone that wanted pain meds. (may he have RA in his next afterlife). Be patient as you segue in and then find a foot hold.
I can't help thinking that swallowing copious amount of nsaids has to not be good. but do you really have any options since you are probably watching and ferreting / driving large amounts of small children around and have to be on top of your game mentally? (You mentioned brood).
prednisone as a high bridge that folks on here talk about. I did not use it as such because it see sawed me to hell, but it might work for you. and how much better to get you some relief than have you desperate.
there are other DMARDS other than mtx or arava but yeah your insurance company is going to want to see a DMARD used before a biologic.
i think it is a great idea to concurrently see a pain specialist if your insurance will allow that.
Rheumies are vastly different. my current one is young, not jaded, yet, her grandmother lived with her her whole life thus far and had JA and RA and was in a wheelchair. my rheumie seems tuned into inflammation and pain.
do not despair. where is smart and personable going to get you if you are chewing a hole in your stomach, have a brood of youngsters at home to take care of and need a bridge plan and one is not presenting itself? (I also think the holidays can be a **tch to feel the sickest at since no one is available)
thoughts and hugs
Ros
I'm just thinking if her behavior is typical, changing to an unknown Dr may not be the best decision. She may be less concerned and even pull me off all meds or something nuts like that! My gma and sis had/has RA, I have a family full of autoimmune diseases so I am pretty educated on this. I just am torn on potentially switching drs. Thx again for the kind words and advice everyone.
I don't have a pcp, don't know where to start with pain management, and am honestly embarrassed at the stigma behind seeing a pain Dr., especially since my rheumatologist would have to send my records over. She would know I was seeing one, and she seems so adament on living with the pain til the treatment works, that I fear her impression of me as a patient would change dramatically. Thx again for all the advice!
That said that takes time in most cases.
It's such a shame these doctors treat conditions that cause such chronic unpredictable pain & yet allow patients to suffer rather then consider the use of pain meds.
The stigma & now government involvement are taking a much needed treatment & making it Taboo.
Such a shame.
I agree 100% with having a good Pain management doctor on your team. According to mine he treats a large amount of RA patients.
He does not focus solely on narcotic therapy & I can tell you it took years to build a trust factor with the PMs I have, one retired & his partner took over. Fortunantly he stepped in for my PM several occasions so he knew me when he took over my case.
Even though I had existing conditions causing chronic pain before my DX with RA he is extremely understanding when it comes to this disease.
I thank god I have him & know it is the only thing that has kept me going.
My RA does not care for pain meds either but has never once questioned my treatment.
On the other hand my PM will not prescribe the dose of prednisone the Rheumatolgist prescribes.
I like that the Rheum. You have did not solely go by your blood work & that she's treating aggressively. Yet I understand your concerns.
There is nothing saying your not entitled to a second opinion.
Just a thought but perhaps approaching this next RA in such a way so if it does not work out you can continue treatment while searching for a good fit.
If neither are willing to treat your pain then a good test may be to see if either would refer you to pain management. Although sounds like you may be able to get in on your own it would sure give you insight on the doctor.
If a doctor would not treat my pain & refused to help me get into a doctor that willingly could I'd run the other way.
To me that simply says he or she does not believe I'm suffering & worse yet is clueless about the disease they specialize in.
Prednisone has always helped control my RA flares, yet the last one hit right around Thanksgiving & the standard dose of 15mg my RA prescribes struggled to control this latest flare.
MTX also put me in bed with headaches & sick as heck feeling.
Since treatments can take some time to control RA do what you must to get some quality in your life. Sounds like you have your hands full, my goodness you must be stressed to the max.
I spent a huge amount of time dealing with the fact I needed PM but it's been my life saver.
I'll never understand why doctors take an oath to do no harm yet let a patient suffer in such pain.
Wishing you the best of luck,
Sammy
I found this amusing as the pain management doctor didn't like to prescribe steroids because he said it greatly masked if his treatment (splints, exercises, meditation, and yes some drugs) were helping!
I did like how my PCP helped though as she seemed to go with whatever worked when the other two couldn't agree, sometimes increasing or giving steroids - other times giving narcotics depending on the situation.
She was the first one to suggest a steroid injection vs. prednisone or narcotics when she found out it was a watermelon sized knee making my life miserable but the rest I could handle.
I'd vote stick with this rhuemy for a while longer (until your ailing gut can clearly tell you which way to go) and get that pain management doctor and PCP on board. You might even find your rhuemy is relieved to not have to address the pain portion as they really seem to like to focus on joint integrity instead!
Good luck and happy healing thoughts going your way no matter what you decide.
He had me take 10 mg of mtx the first week and then up to 20 the next and there one. I tolerated that fairly well and there was a lot of improvement in how swelling went down and range of motion increased. In the first three months, I added some joints, so he upped it again.
Fast forward to my annual Christmas flare which I was expecting. I did NOT expect for it to so viciously spread to other areas of my hands. (Musician at +Christmas = REALLY need my hands and ESPECIALLY my thumbs!) So I called in. The nurse told me she would put it on his task list and call me back, so I don't think I was expecting anything immediate, but within a couple of hours, a prescription for Prednisone was called in that I could pick up on my way home. I was stunned to see that he called in 20mg/day for a week and then tapering to 10mg/day for a week. It took a few days for the Prednisone to kick in and I started the tapering a little earlier and tapered it farther down to 5mg for the last few days.
I think what it still getting his attention is that I havent' really complained about the pain, but it's still spreading to new joints. Everything I think it has gone everywhere it can, it screams "SURPRISE" at me and goes somewhere else!
My regular doc has prescribed tramadol fo rme for pain that I can't take anymore. He asked me how many I was taking and I rarely take more than one or two a week (usually the day or two after mtx day)and he is completely comfortable with that. The rheumatologist hasn't had any complaints the tramadol being in my file either. Maybe a primary care sort of doctor would have more compassion for your situation and know you better? Mine figured out fairly quickly that I try not to complain unless there is something really wrong.